posted
How many of you that have been diagnosed with Lyme actually get positive IGG Western blot? I have been sick for about a year and have positive IGM but neg IGG - after a tick bite behind my ear. So they are saying it is false positive. "They" being infectious disease.
I understand it should be a clinical diagnosis...and the ID that said mine was false pos didn't see me...just talked to my doc on the phone.
Why such the divide between LLMD and ID? It really makes this difficult. On the same note...I don't want to chase down this path if it is in fact another problem.
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posted
Welcome to the land of Lyme politics, or rather, Lyme denialists - it has a lot to do with money - the insurance companies don't want to pay for the epidemic so they get the medical field to say there's no chronic Lyme, etc. ID docs are standing down on recognizing the illness.
Not only that, but the rest of the medical field doesn't know much either, including the general practitioners. So your gp isn't going to realize the seriousness of the illness either.
That's why we have LLMDs, to do the right thing by us, to diagnose and treat Lyme and co-infections. www.ILADS.org is a good site to read through.
I suggest you watch "Under Our Skin," the Lyme documentary - you can watch it for free at www.hulu.com or watch on Netflix. You could also read "Cure Unknown" by Pamela Weintraub.
Yes, I'd say your presentation would be considered Lyme-normal, to get a positive IgM Western blot. And not everyone does, so it's helpful to actually see positive bands.
You can ask in the Seeking A Doctor for LLMD referrals.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
AAAAaarrrgghhh! I tested positive by way of an indeterminate ELISA and an IgM Western blot. On the fax that came back from Stonybrook's labs it says according to CDC criteria, I had a positive test for Lyme. IgG can take time to develop.
One thing I know for sure, do not take the word of an infectious disease doc. I have one and he can't understand why my iron levels are soooo low. He has tested for syphillis and TB, both negative-DUH, but refuses to test for anything else.
We could discuss to infinity why this divide, but it takes up way to much energy. So, it just is. Don't focus on the why, get to a lymeliteratedoc. Smile real big when the ID says you should be fine and take your test results elsewhere. I do. It works okay for me.
With that said, my ID tested me recently with the "New and Improved ELISA", which came back negtive.
I cited the study done by Tulane that said the further out from initial infection the less reliable the test. They used monkeys. My ID said monkey tests had no significance in human research. His teaching hospital had just been cited for losing monkeys in the community and mistreatment.
ID's lie and you just have to get used to the fact and spend your energy on getting well.
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Breaking this up for easier reading for many here.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Lyme disease is embroiled in a major medical controversy that has gone on for at least 25 years.
The ID docs are in one camp, and the lyme docs are in the other camp. So, that's why you are experiencing what you are experiencing.
You ask why the 2 camps can't agree? Ha! That gets into people's motives. Who can be sure of motives.
The ID doctors follow the lead of the Infectious Diseases Society of America (IDSA) which is a panel of 12 ID doctors. They have decreed the following:
1. lyme is rare (meaning that no doctor should ever expect to find a case of it, or if any, perhaps one case in their lifetime), and
2. lyme is easily cured with 30 days of doxycycline, 200 mg per day.
The other camp is made up of the lyme doctors who generally had lyme themselves or a close family member had it. They tried the IDSA lyme treatment and it failed. So, then they researched the subject for themselves. Burrascano is a pioneer in this.
The lyme doctors say:
1. lyme is more than an epidemic (and it is everywhere), and
2. lyme is very difficult to cure. If left untreated, it will progress and will never go away.
So, you need to educate yourself on the controversy and decide which camp you believe. Then, ignore the other camp and get your diagnosis and lyme treatment.
A Boston TV station did a show on the lyme disease controversy a few years ago. Here is Part 1 of the Boston Chronicle video on YouTube:
I suggest you watch this video a few times. The program is in 2 parts. It explains the lyme disease controversy and the role the IDSA plays in making it difficult for a person to get a lyme diagnosis and get good lyme treatment.
Posts: 9931 | From Maryland | Registered: Dec 2007
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
"They" are wrong. ID's are actually detrimental to anyone with lyme. They misinform and let the patient falsely believe they are o.k. meanwhile, lyme takes it's grip.
I was IGM Pos and IGG neg. I was also told "false positive". I let it go for a year and a half, not believing the dr's could be that far off base.
Properly diagnosed at the time would have been an easy fix, since I've let it go, I've spent tens of thousands on abx, missed 2 yrs of work, been bedridden for months.....not worth it.
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"IgG can take time to develop."
Agreed. I asked my LLMD about it and was told it can take a couple years to turn positive or sometimes it even never shows up on the test.
Posts: 2839 | From California | Registered: Jul 2012
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posted
Re what Otter said about the Embers experiment using monkeys, I heard in a recent talk that monkey DNA is only .001 different from ours. That's pretty close.
Posts: 13116 | From San Francisco | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Much is explained in the links here. See the "Diagnosing" thread.
Western Blot results explained -- and the "politics" of lyme, the difference between ILADS and IDSA, etc.
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